Our story.

Our family’s journey with Nephrotic Syndrome began in April 2021 while on a family vacation when our 2-year-old daughter, Lawsyn, just wasn’t herself. She was swollen around her eyes, had a hard, distended belly, and wasn’t as active or talkative. During our vacation, a trip to the local urgent care did little to comfort us. Everyone thought she had allergies and was constipated, and she was treated based on those symptoms. We ended our vacation early, still unsure why suppositories and Benadryl weren’t helping.

Upon returning home her swelling worsened and she was barely urinating, which prompted a trip to our pediatrician where steroids were introduced. After four days of steroids, no improvement, and a distressing call from the babysitter reporting Lawsyn had continued to sleep, hadn’t urinated (for 22 hours), didn’t want to eat or drink, and was having trouble breathing, sent us on a collision course we least expected.

We took Lawsyn to St. Peter’s Hospital where Lawsyn was diagnosed with Nephrotic Syndrome / Minimal Change Disease. We left with a high dose of steroids and a referral to a Nephrologist at Seattle Children’s Hospital. Despite the high dose of steroids, Lawsyn continued to worsen to the point we went to the emergency room at Seattle Children’s Hospital just a day before her first Nephrologist appointment. There, she was admitted for three days where she received I.V. steroids, Lasix to reduce the swelling, and an Albumin infusion to replace the protein from her blood that she was losing in her urine.

Lawsyn quickly lost 5 ½ lbs of fluid from her little body, going back down to her normal weight of 28 lbs.  We were discharged from the hospital with a regimen of high dose steroids (for the foreseeable future), Calcium and Vitamin D supplements, urine test strip, and hope that she would grow out of her condition over time. We headed home with optimism and tested her urine daily in hopes to seeing a change on her test strips.

Hope began to slowly fade as the weeks went by and the urine test strips still came back dark green indicating high protein levels in her urine (no change.) After two months without a change, Lawsyn’s Nephrologist decided it was time to take a closer look and ordered a kidney biopsy. Two days after Lawsyn’s 3rd birthday, she underwent a kidney biopsy and the results were devastating. Lawsyn was then diagnosed with Focal Segmental Glomerulosclerosis (FSGS.) For more information on FSGS, see “Our Cause.” Four months after Lawsyn’s diagnosis, we formed L.C. Renal Alliance. Read more about “Our Vision.”